The Northland household’s farewell son: the primary New Zealand youngster to be born with Pallister-Killian syndrome

Julie Hepi says that her son Kassius was a “sassy” and “good” youngster. Photograph/Tania Whyte

The household of a late-teenager, the primary New Zealand boy to be recognized with Pallister-Killian syndrome (PKS), say he fought a battle his namesake Muhammad Ali can be happy with.

Kassius Hepi, 13, from Onerahi, died on August 10, after dwelling eight years longer than docs predicted.

He was the primary youngster born with the sporadic mosaic situation in New Zealand and was one in every of 300 to 500 youngsters worldwide recognized with PKS.

The syndrome is a particularly uncommon genetic dysfunction current at start and brought on by the existence of a small additional chromosome in some cells of the physique.

Indicators and signs of the situation range from youngster to youngster and range in severity, however sometimes youngsters have extraordinarily weak muscle tone, mental decline, developmental delays, distinctive facial options, variations in pores and skin pigmentation and seizures.

Kassius, the youngest of 4, was unable to stroll, sit, communicate, eat or management head actions; he had low muscle tone, seizures, and later in life respiratory failure.

Kassius Hepi was born with the extremely rare genetic disorder, Pallister-Killian syndrome.  Photo / Supplied
Kassius Hepi was born with the extraordinarily uncommon genetic dysfunction, Pallister-Killian syndrome. Photograph / Provided

“A starship [Hospital] the physician informed us when Kassius was 5 years outdated […] ‘or he’ll die as we speak and if he does not, he positively will not make it to adolescence,'” mom Julie Hepi stated.

“Nobody on the Whangārei hospital had ever heard of PKS besides ophthalmologist Brian Kent-Smith as a result of, previously, he had been working in Africa and had learn a number of books and that is how he knew about it.”

However Hepi’s “sassy” and “good” son, named after the good American boxer Muhammad Ali, born Cassius Marcellus Clay Jr, put up the combat of his life.

“[We named him after Ali] with out understanding that he would even be an awesome fighter all through his life”.

He spent lengthy intervals within the hospital whereas Kassius battled pneumonia, infections and, extra not too long ago, seizures. When he was three years outdated he had 13 hospital admissions in eight months.

“He nearly died many instances and he at all times proved the docs fallacious,” Hepi stated.

Nonetheless, intense seizures grew to become a function of Kassius’s later years: a 40-minute episode took his life.

Sure, there have been difficulties that PKS embedded in Kassius’s life, however the teenage years had been full of love, laughter, colourful lights, and good style in music.

“It is humorous, he likes old style music,” stated Hepi.

“He did not just like the newer stuff, though his older brother tried to introduce him to techno.”

Hepi stated that the whānau had created a customized neon signal as a present for Kassius’s thirteenth birthday.

His identify was lit up in his favourite shade, blue, adopted by Muhammad Ali’s well-known quote, “the unimaginable is nothing,” which had turn into whānau’s mantra.

Photos of Kassius Hepi with mom Julie and her favorite toy.  Photo/Tania Whyte
Pictures of Kassius Hepi with mother Julie and her favourite toy. Photograph/Tania Whyte

Her wheelchair was decked out in Christmas lights, as was her bed room, which nonetheless has the nice and cozy, colourful glow usually loved across the festive season.

“We at all times made certain he had lights on for Christmas. He just about stared on the ceiling for many of his life, so why not make it attention-grabbing for him?”

The lights had been only one a part of Kassius’ vibrant world that the budding artist typically transferred from actual life to canvas.

Kassius loved Christmas lights, so much so that his family kept them on long after the holiday season was over.  Photo / Supplied
Kassius cherished Christmas lights, a lot in order that his household saved them on lengthy after the vacation season was over. Photograph / Provided

Though he couldn’t management his arms and fingers or maintain a brush, he moved his paint-laden fingers and ft to create hanging pictures that mirrored life round him.

“Kassius’s grandfather was the primary to see animals and other people in his work,” stated Hepi.

And plenty of birds, he added.

One of the birds painted by Kassius.  Photo / Supplied
One of many birds painted by Kassius. Photograph / Provided

Kassius as soon as painted two figures along with his ft that bore a hanging resemblance to Mary and Joseph bending over a cradle. On one other event, he created the picture of a ribcage shortly after his sister Shalia, additionally his devoted caregiver, was critically injured in a automobile accident.

“Kassius solely painted this stuff for individuals he cherished. If he did work in nursery or college, they did not have exceptional pictures,” Hepi stated.

Although Kassius could not move his arms or control his hands, he loved to paint.  Photo / Supplied
Though Kassius couldn’t transfer his arms or management his fingers, he cherished to color. Photograph / Provided

The mark Kassius left on individuals was evident when the Waikanae Lions Membership, the place {the teenager}’s grandmother was a caterer, partnered with the Onerahi Lions Membership to stroll 500 km to boost funds for the primary van for the disabled. of Cassius.

Its attain prolonged past the borders of New Zealand to Texas, the place the mom of a PKS boy began a Give away a small web page to assist Kassius’s household after his loss of life.

Hepi stated her son’s parting, whereas backed by heartbreak, was about sharing the laughter and pleasure that Kassius was so well-known for.

“I actually assume he was able to go. He had defied the docs, he lived longer than they stated he would, sure he was prepared.”

The whānau are gifting away Kassius’ gear, assets and, most significantly, lights to different households with disabled youngsters and to Variety Palms Respite Care Cottage.

“It’s totally tough. For instance, diapers, they provide you two a day and that is all you get for the children. We had been in a position to get Kassius as much as 4 a day.” […] however there are nonetheless youngsters who solely get two,” stated Hepi.

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